Post-Transplant thoughts #mycousindave

My cousin Dave and I email frequently. Usually sending each other random Seinfeld trivia questions, discussing recent movies or television shows, or music. He was the first one to really introduce me to the Beatles when I was about 10. He put late-1970’s giant headphones on me and put on “Revolution 9” from the White Album and he and his brother went in the corner and giggled as my 10-year-old brain was exposed to an onslaught of the trippiest weirdest Beatles song ever recorded.

Dave hit me, rather out of the blue, with a somewhat serious question about my recent experience of getting a liver transplant and the months leading up to it. Here’s my response (please feel free to listen to Revolution 9 while you read…it’s a fairly good audio accompaniment to how I felt during the crazy of the last year.

Cousin Dave: “In all your dealings with the Liver situation John, What period was THE MOST painful of the entire ordeal so far?”

Physically painful?  Definitely the first time trying to stand up out of bed post surgery. They made me do that on day 2. It took two nurses plus my sister Cara to get me on my feet. It HURT. My entire core, many of the muscles in my abdomen had been severed. After standing for a minute, I was spent. The post-surgery pain was significant and I was on pain medications for a couple weeks post-surgery.

Getting pumped with lots of stuff!

Pre-surgery the worst physical pain were the paracentesis/thoracentesis procedures, where they poked a needle into my abdomen or my upper back and sucked out extra fluid that had built up. Those were not fun and had many gallons of excess fluid drained over the course of many months.

In the ICU after my first episode of hepatic encephalopathy

But more than the physical pain, I’d say the metal pain was much more difficult. Dealing with the daily roller coaster of emotions of my mortality, dealing with the ups and downs of my health…one day I could be fine and then a few hours later be rushed to the hospital in an ambulance. The frustration of feeling helpless and hopeless, that I couldn’t trust my own brain to tell me when I was not thinking clearly (I feel like I can empathize with people suffering with Alzheimer’s much more now) but mostly the burden of the fear and pain I knew my family and friends were going through. All of that weighed heavily and still does.

Cousin Dave: And also, What period was THE Most Joyful of the whole thing?

How how so many people reached out, even people I barely knew who would tell me how I had made an impression on them. Like one girl I was facebook friends with (who I honestly don’t remember meeting), told me that she met me in a bar and we started chatting and I mentioned I played piano. And she said she had always wanted to play but never learned and she regretted that. I told her that it’s never too late to learn. And apparently she got home and started taking lessons and thanked me. You never know how little things you do and say can affect other people’s lives.

Or another girl name Gabriella, again a Facebook acquaintance, who had read when I posted that I was afraid I was going to miss a show. I had tickets to see Patton Oswalt at the Hard Rock live but I was still in the hospital the morning of the show. Thanks to the hustle of a very caring and resourceful nurse, she wrangled all my doctors on the phone on a Saturday and was able to get me discharged, but I didn’t have a chance to post until after the show that I made it just in time. After I got home I had a message from Patton Oswalt himself in my inbox because Gabriella had messaged him a told him I was sick.

There were so many moments like that, like the Patton Oswalt video, friends sending me funny messages or videos, everyone coming to a dinner at my favorite restaurant…like the week before the Covid lockdown began…the many friends who visited me, brought me groceries or tasty home cooked meals.

And I cherish how much closer I have gotten with my family who were all there the whole time. I had really come to grips that this might be the end and so I began to cherish every moment and opportunity that I had with every friend and loved one I could. I made amends with many former friends, forged new ones, I found a newly optimistic outlook on life. I really feel like I almost got to
experience my own funeral in many ways, and now I get a whole second chance at life.

Cousin Dave: Was that photo actually you at Doc’s\Transplant Place today?

Yes, that is a selfie I took in the waiting room of my transplant clinic this morning. Received all thumbs up from my doctor. Reduced more of my meds and it was my last visit with my transplant surgeon. Next visit I go back to my pre-transplant doctor.

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